Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research
Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research
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DOI：
10.1177/0162243912470009
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发表时间：
2013-03-01
影响因子：
3.1
通讯作者：
Garrison, Nanibaa' A.
中科院分区：
文献类型：
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作者：
Garrison, Nanibaa' A.
2004年，哈瓦苏派部落对亚利桑那州董事会和亚利桑那州立大学（ASU）的研究人员提起诉讼，因为他们发现，最初为2型糖尿病的基因研究收集的DNA样本，已被用于其他几项基因研究。这起诉讼于2010年4月达成和解，包括金钱赔偿和向哈瓦苏派归还DNA样本，但没有为研究人员留下法律先例。通过半结构化访谈，美国研究机构的机构审查委员会（IRB）主席和人类遗传学研究人员揭示了他们对Havasupai诉讼的看法。对于受访者来说，这起诉讼引起了人们对土著对基因研究的关注，并提高了他们对土著观点的认识。然而，受访者认为哈瓦苏派案对他们的工作没有直接影响；如果他们这样做了，那就是他们认为需要通过获得广泛的同意或完全避免与土著社区进行研究来保护自己，这就提出了土著和少数民族参与者的重要正义问题。如果研究人员和内部审查委员会不根据这种情况改变他们的做法，这些人群可能会继续被排除在大多数研究之外，并且从参与基因研究中获得资源和潜在利益的机会更少。
In 2004, the Havasupai Tribe filed a lawsuit against the Arizona Board of Regents and Arizona State University (ASU) researchers upon discovering their DNA samples, initially collected for genetic studies on type 2 diabetes, had been used in several other genetic studies. The lawsuit reached a settlement in April 2010 that included monetary compensation and return of DNA samples to the Havasupai but left no legal precedent for researchers. Through semistructured interviews, institutional review board (IRB) chairs and human genetics researchers at US research institutions revealed their perspectives on the Havasupai lawsuit. For interviewees, the suit drew attention to indigenous concerns over genetic studies and increased their awareness of indigenous views. However, interviewees perceived no direct impact from the Havasupai case on their work; if they did, it was the perceived need to safeguard themselves by obtaining broad consent or shying away from research with indigenous communities altogether, raising important questions of justice for indigenous and minority participants. If researchers and IRBs do not change their practices in light of this case, these populations will likely continue to be excluded from a majority of research studies and left with less access to resources and potential benefit from genetic research participation.